My Journey With William - An Exploration

'Waiting' revisited. Beginning the story

2009-03-14T12:21:00.000-07:00

I have spent the last few days sifting through the hundreds on hundreds of photos I took through the first steps on our transplant journey. I deleted over 800 so you can imagine how may I have - where would I be without digital photography?! I am going to get about 500 printed so I can begin to sort them into the stages of our journey and some of the themes that we carried and that carried us along the way. From this, I will begin to re-tell our story and take some of those themes to develop other bodies of work that are more losely by our transplant journey. I am really excited about this. There is so much material, so much inspiration and scope to create.

Looking through all the pre-transplat photos of William can be really rather distressing. He looked so vulnerable throughout and so ill in the last few weeks. This image is one that I find rather haunting. His face is so serene yet distressed at the same time. I think it reflects our period of waiting very well. Waiting will certainly be a major theme in my work.

First steps into life and new life

2009-03-10T14:41:00.000-07:00

William the day he was born

William the day his new life began with his transplant

I am looking through photos at the moment to see which ones I want to use for my various projects and how I may want to use them. I was struck by the similarity in these two images and what they represent. The relief, worry, hope, excitement. Such a myriad of conflicting emotions we felt at both those times. It is amazing to consider the journey that has taken William, and us, from the first to the second picture. A journey we would not have believed for one minute could have been ahead of us. I wonder how we would have coped if we had have known. This makes me realise how important it is to just concentrate on the day we have right now and make the best of that without worrying about tomorrow. We don't know what the journey ahead of us now will hold. I am trying to just take it step by step.

Energy transfusion

2008-10-28T12:21:00.000-07:00

Comfort

2008-10-20T15:05:00.000-07:00

I posted this on my main blog but felt it was worth posting here as well. I love this picture of William enjoying a 'Daddy cuddle'. Paul is busy and not around very much at the moment and William was looking forward to spending some time with him, especially as he was feeling particuly upset about things at the time.

Line Removal

2008-10-18T14:34:00.000-07:00

William after his line was removed. It was tricky to get out and removing an infected line often makes him feel rather yucky as the bugs can spread during the procedure.

The line tip on its way to the labs to see if it grows anything.

IV access without a Hickman Line. William will have these in his feet until Tuesday (if they last that long).

While William was in theatre, I had a look around some more art on display around the hospital.

I think this was done by the school. I like this image as it sums up some of the despair you can feel when people keep on saying how urgently you need that transplant. The hat in the corner could be a magicians hat. It amused me as I keep telling people that you can't just magic an organ because it is urgently needed!

The fish again. We were up on the top floor with them in the main operating theatres for William's line removal. They just hang there, suspended from all the life being acted out below. They are beginning to be a bit of a mascot for me!

This is what they look like form the bottom of the hospital.

Time Bites

2008-10-17T14:02:00.000-07:00

Emma from Live Life Then Give Life asked me if I could share with them a photo that sums up waiting for William's transplant. There are a few images that I think do that but perhaps this one is a good one. Every night, I have the same routine. I have a nice cup of something to help me relax my body and read a book for a while to empty and relax my mind. Making sure my phone is beside me is the last thing I do before I settle to sleep. The book title says it all too.

Lonely Nights

2008-10-11T13:36:00.000-07:00

I like the way William's equipment is reflected in the door window when it is lit by the flash. When you look through, all you see is the treatment he is dependent on until we get that call.

Another badly lit picture where the shadows seem to work.

The tap that drips incessantly all day and all night. You can hear it no matter how you are trying to block out.

William's TPN pump is another thing that clicks and whirs twenty-four hours a day at the moment. It cuts through the silence in the same way as it cuts through the darkness in this picture.

We always seem to have beds and rooms on the inside of the hospital. When William is unable to go out he sees nothing of the outside world. The has a particular interest in modern art. It feels a lot like sleeping in an art gallery, something that can be rather eery at night. Having all of this outside your window heightens the feeling that you are not part of the real world anymore. You have been separated from the things that are happening on the outside of the hospital wards. It looks good but it can be quite suffocating when you see the same internal views day after day, week after week and month after month, and then again next time you are in. We usually have the sculpture of the ball being balanced by an acrobat (at the bottom of the pictures) outside our room. Our is one of those in the picture. That ball has been the first thing I see when drawing my curtains for the quivalent of well over a year. We are in a different ward at the moment and can see the fish for the first time. I have some day time 'view from the window' pictures to post tomorrow. The fish are beginning to represent that feeling of being tied still while the world gets on without you. They just hang there watching life in a busy city hospital happen underneath them. That is what it is like waiting for a transplant. Hanging still, watching everyone live the kind of life you are aching to have back. The window will then be clear of all the drips and drains that it reflects back at us at the moment. I am working on some poetry to go with some of these images. It will be ready enough to post on here one day!

More Images

2008-10-07T15:11:00.000-07:00

Although William is in the shadow here, I like the picture. It kind of shows the child playing with his trains as in the shadow of all the medical equipment around him. He is a bit puffy here, typical for him during a line infection.

Again, I like the image of William's TPN pump and lines at the forefront of this picture.

The dreaded blood culture bottle - although this one gave us a clear result, indicating we are on top of things.

Line Sepsis

2008-10-01T15:18:00.000-07:00

I have learned lesson number 1!

2008-09-26T09:47:00.001-07:00

'Waiting'

'TPN'

Rule number 1 for SLR photography - make sure lense is in properly or focus and exposure will not work properly!! I said it is a steep learning curve but I am getting there. Explanations for the images are in the blog entries below. I was going to edit them with the new photos but this is my experimental sketch book so the good stays with the bad.

Better focus

2008-09-25T12:16:00.000-07:00

I have never used an SLR camera before so it is a steep learning curve. These shots are in better focus than yesterday's. I am only using the lens manually at the moment - the rest is set on automatic but, gradually, over time I will learn to control it all and get better shots. Then I will move onto learning how to get more out of the editing software.

I am going to do some writing this evening.

Stocked Fridge

2008-09-24T13:13:00.000-07:00

The above images show the four litre bags of total parenteral nutrition, TPN, that feeds William intravenously through a tube leading into the top of his heart. He is attached to this feed 20 hours a day. These bags nourish William but also nourish the bugs that leak from his gut into his blood stream. TPN keeps William alive but could also kill him.

Waiting

2008-09-23T04:03:00.000-07:00

Welcome to 'My Journey With William: An Exploration'. This is where I plan to explore my creative response to our journey and experiment with different methods and media. I very much hope you will offer comments and criticisms that could help me develop my work - who knows where this may lead.

This image shows the bag that now sits at the top of our stairs in readiness for the call. I like the way some of the photos that are displayed up the staircase can be seen. The bag is packed for the a journey that will take us all from our current life into a new one that will soon be captured in photos to be mingled among those already on the wall. The photo is a bit lonely too, the bag is all alone with all the family activity happening around it. It can feel a bit like that on the list. We are suspended in a situation and life happens around us. We join in but know our lives are dominated by our wait and the treatment William is on while we wait. When that bag is repacked after transplant, it will be packed for a journey back into living life at its very fullest. The image is very still too, frozen in time. To me, it depicts the way time seems to be strange on the list, simultaneously going very slowly and very quickly. Time seems to stand still while the world around you keeps on going.